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Lacey: Syntelencephaly and partial Agenesis of Corpus Callosum

Lacey was pregnant with twins when she was told twin A wasn’t developing typically. Doctors saw abnormal brain development, but didn’t have a definitive diagnosis. Shortly after birth twin A, who they named Tell, was diagnosed with partial Agenesis of Corpus Callosum and a rare condition called Syntelencephaly.

Summer: Anencephaly

Summer found out that Ares had Anencephaly during an early ultrasound and learned that if he made it to term and was born would only live a few hours at best. Rather than aborting Ares, Summer wanted to meet and hold him and if possible have Ares be an organ donor so other babies could benefit from his life. Ares lived a handful of hours and passed away. Summer she sees the positive outcome on herself and her family.

Brittany and Tyler: Hydrocephalus, Encephalocele, and other complications.

Brittany and her husband Tyler struggled for years to get pregnant. When she got pregnant with their son Max, they were ecstatic. During a prenatal ultrasound, doctors found a multitude of abnormalities, including a club foot, heart abnormalities, missing brain matter, and Hydrocephalus. Doctors also found that Brittany had Amniotic Band syndrome.

Max lived an amazing 5 weeks before he passed away. He constantly amazed medical professionals and his family with his abilities despite having almost no brain. He has forever changed his parents live’s, and has made a big impact on people all over the world.

Maria and Brandon: Chromosomal Deletion 9Q

While Maria was pregnant with her son Chase, a prenatal ultrasound revealed a cleft lip and some umbilical cord abnormalities.

After Chase was born, testing revealed he was missing part of a 9th chromosome on the Q branch, known as Chromosomal Deletion 9Q. Chase is the only known person with this condition, in it’s severity, in the whole world.

Kim: CHARGE syndrome

When Kim went in for a prenatal ultrasound, doctors found her baby had a cleft lip and a heart defect. After her daughter Jackie was born, it was discovered that Jackie had CHARGE syndrome. In the begining Kim struggled with how to cope with Jackie’s diagnosis. Jackie has changed Kim and her family’s world for the better. She has shown them what really matters in life, and that it is precious.

After Evanna was born, Kierra and her husband received an official diagnosis of 22q11 Deletion syndrome.

When Evanna was 5 months old she had her first open heart surgery; and subsequently spent 400 days in the hospital due to complications.

Evanna has a major heart condition know as Pulmonary Atresia– MAPCA’s (Major aortopulmonary collateral arteries) which is often a complication found with 22q11 Deletion syndrome. She also has a critical airway, known condition known as Tracheomalacia.

She and her husband Jeff were told to either terminate the pregnancy, or plan a funeral. They chose to continue the pregnancy. Arabella is now a beautiful 2 year old. She was officially diagnosed with Ellis-van Creveld syndrome, a sub-type of Short Rib Polydactyly syndrome. This syndrome has a 30-50 percent survival rate.

Katherine is now expecting her third child, Shiloh. Shiloh has also been diagnosed EVC, as well as a major heart defect. They do not know if Shiloh will live, but are grateful for everyday they have with her.

Lauricia: Cornelia de Lange syndrome

Lauricia had several ultrasounds during her pregnancy that indicated her son Zacchaeus was not developing typically. Lauricia and her husband Jose found out shortly after Zacchaeus was born that he had Cornelia de Lange syndrome.